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Tuesday, November 5, 2013

Dear Special Needs Parent: You Are Not Special

Less than a year into this journey, I’ve already gotten the
question about what I would tell someone who is facing a new diagnosis—of Down
syndrome or of some other disability facing their child.My advice to special needs parents?You are not special.

Special needs are everywhere.Looking around just at my group of friends
here in town, pretty much everyone has dealt with some “disability” of at least
one of their children.Premature babies
who spent time in the NICU. Kids getting
early intervention services. Parents
going to repeated doctors appointments—sometimes without finding answers,
sometimes learning that their child has a lifelong health concern.Kids who get labeled with sensory processing
disorders or autism or speech delays.Parents
who wonder if they should be seeking professional help to figure out a label.IEPs, changes of schools, experiments with
homeschooling.

And that’s just the kids.Even those of us adults who are usually-abled have our periods of
disability.Flues that knock us out for
a week, joints that don’t behave like they used to, mental health outbursts
that make daily tasks insurmountable.

Nothing about Max is unique.Nothing about our family is unique.

These challenges sometimes suck.I don’t mean to undermine that—especially if
you are struggling through a particular challenge right now.You deserve a pat of the back for the ways
you fight for your child.You deserve
hugs when you worry about your child.You are entitled to shake your fists at the sky when you have to watch
your child go through ordeals that are unfair, damn it.

But none of that makes you special.

I’m sure someone thinks you are special.Your partner, your family, your children—they
think you are special.Your friends can
list off the ways that you are special.And maybe some of them, in some well-meaning gesture, will tell you that
this is why you have a child with Down syndrome.They will tell you that a special person such
as yourself has the patience, the skill, the compassion, the love to deal with
a special child.

But your child isn’t really all that special, either.And your child doesn’t need a special parent,
they just need you.

And that reminder, more than any inspirational story, has
helped me make my peace with where we are.We can do this, not because we are special, but because we are ordinary.